Tag: Technology

A Teaching Aside

So, every once in a while I help out families that have to navigate the educational system with disabled children. Most often autistic or fragile X kids (once again this is a good time to note I am not a proponent of person first language). These phone calls tend to be very similar each time, and I find that sad. The school team is telling parents their children cannot succeed in anything other than a highly restrictive environment. Life skills classrooms rather than mild/moderate classrooms, self-contained rather than resource. Behavior units rather than a compassionate behavior plan… The school’s showing a complete lack of faith and belief in a child’s ability; contrasted with frustrated parents trying their best to advocate for their child’s abilities.

The theme of many of these phone calls are boiled down in this tweet:

Too often parents see their disabled child with infinite potential, but the school sees a profound disability clouding the child's potential

This is what I am going to address in this post: How should schools approach the educational placement of disabled students.

Least Harmful Assumption

My approach in special education is to always favor what I call the least harmful assumption. The definition of least harmful assumption is as follows (paraphrased from this piece by Anne Donnelian and this conceptual extension from Zach Rossetti and Carol Tashie):

The Least Dangerous Assumption is the premise that, in the absence of evidence, we believe we have not yet found a way to make it so a child or adult with a disability can [learn], instead of believing he or she can’t [learn]

More colloquially, it is less harmful to the student to assume they can be taught how to succeed rather than assume they will never be able to accomplish.

Example(s)

(from Rossetti and Toshie – emphasis mine)

An example particularly applicable to my life (fishing)

…If I were to go fishing for a week and not catch any fish, there would be two assumptions that could be made.

First, I could say “there are no fish in the lake since I did not catch any, and I know what I am doing.”

Or, second, I could say simply that “I did not catch any fish that week, and I will keep on trying.” The first assumption seems rather arrogant, while the second one is more realistic and respectful.

(There is a third assumption that I could make which would be that I am not a good fisherman, but we won’t go there).

An example for disabled students in a school setting

Imagine a child who does not talk with the spoken word and moves around using a wheelchair. Her teachers have worked with her for a month and have not yet seen any evidence of what she understands. In fact, they wonder if she knows or is aware of anything at all.

These teachers can make one of two assumptions. They can assume that “what you see is what you get” and that this child does not know anything, that her brain is as empty as that lake. As such, they can educate her in a way that reflects those assumptions (perhaps segregated classes or regular classes with low or no expectations). Now imagine her as she graduates and uses a communication device to say, “Why did you treat me so poorly?!! I am smart and you wasted twelve years of my life!” A very dangerous assumption was made, with results that none of us would desire.

Now, consider the second assumption. These same teachers can recognize that her movement differences are differences and not deficiencies. They can assume that she knows lots and just isn’t currently able to show what she knows. Her brain is as full of knowledge and potential as that lake is of fish, but they just have not been able to reel anything in yet. As such, her schooling would reflect these high expectations and she would be considered and respected as a valued member of her school and classes. Now again, imagine her twelve years later at graduation, using her communication device to say, “Thank you from the bottom of my heart to all of my teachers who believed in me and made me feel as if I truly belonged and treated me like all of my classmates.” This is the least dangerous assumption, one that results in a young woman who can celebrate her full and fulfilling life.

But consider a third scenario as well. What if we never come up with a way for this young woman to communicate her intelligence? What if, after twelve years as a valued and respected student in all general education classes, we still do not know exactly what she has learned and knows? What harm was done? What was lost? Nothing. And that truly is the least dangerous assumption.

Lifting Up vs. Punching Down

When we look at a disabled individual, we have two choices. We can focus on their abilities and work on a plan to help them shine, or else we can prejudice ourselves and find ways to make sure our preconceptions are validated. In other words, we can lift them up and give them the chance for success, or we can punch them down and make sure they remain unable to do things.

This can be thought of as a form of Pygmalion effect, as diagrammed below. If we believe in them, they will conform to our belief and rise up. The same works if we constantly express a belief of inability. The student will conform to our expectations.

My approach in special education placement is to assume the student is able or can be taught to do whatever they need to know. I prefer general education over resource, resource over a self-contained special classroom, and I prefer a mild/moderate over severe/profound special classes, and I favor anything to a special school.

I have worked with students with Fragile X syndrome, and I have found the following to be true. If you work hard enough and/or give appropriate scaffolds, they can learn how to read. They can do basic math, especially if given a calculator. They can learn routines in a classroom and behaviorally fit in with the other students. They can mainstream for academic and nonacademic subjects. They can learn how to ask for help. So, why would I immediately place them in a life skills class that assumes they cannot do the above things? Especially if I have a classroom that moved more slowly academically, but still has comparatively high expectations for the student.

With autistic students, I assume they can develop appropriate-enough of social skills to exist in a typical classroom. I assume they can self-regulate. I assume they can take care of their own sensory needs. I assume they can communicate effectively, be it by sign, speech, AAC, PECS, or whatever. I assume they can learn to cope. But they have to be taught. So why would I immediately place them in a classroom that is designed to prevent these kids from having the experiences necessary to learn the above skills? Why would I assume they will not be able to learn?

Later in this post I will give a specific example of a student with cerebral palsy. My assumption for people with cerebral palsy is that they have sharp minds but lack control over many functions of their bodies. Their physical disabilities are not indicative of a weak mind. In fact, the opposite is more reliably true in my experience. So why would I try to assign them to a special school that specializes in physical disabilities, but makes assumptions that include an incapacity for learning? Why would I do that to them?

This can be extended to any student with any challenge or disorder, be it mental, neurological, or physical. The U. S. educational system has a track record of making poor, even harmful assumptions about race, socio-economic status, learning disabilities, medical or psychiatric diagnoses, etc. If we could screw up our assumptions, we did. This was why the idea of a least dangerous/harmful assumption was formalized all the way back in 1984, and we still have difficulties consistently applying it.

My Experiences With a Least Dangerous Assumption

When I was in elementary school, my mother was a 1:1 paraeducator for a young woman with cerebral palsy in the junior high. This young woman used a wheelchair for mobility, required high levels of assistance for personal care, and her speech was very hard to understand. My mother’s job was to help: this student was the one doing all the work for her assignments, tests, etc.

I remember one day this young woman came to our house and was in the kitchen talking to my mother (by now I knew her well enough that I could understand her when she talked). Because I liked her, I drew her a picture of a red barn with a window. It was a typical young child picture of a barn. The perspective was awful, the windows were crooked, etc.

When I gave the picture to her, she commented that the barn would look better if the perspective were fixed and motioned with her arms how this l look. She also gave me a few more notes on how to improve the picture. To me this was not altogether unexpected feedback given her father was an art teacher at the high school.

In retrospect, I realize something funny. I was not at all surprised that she gave me this feedback and did not even process at the time how some people would not be pleased to receive feedback on an art piece by a young woman with cerebral palsy. I took her notes and improved my drawings. I then sent them to school with my mother to give to her.

Fast forward to a year or so ago.

I worked with a student in 4th grade. There had been discussions by the school team about having this student go to a special school for profoundly disabled students because they have cerebral palsy and required a lot of assistance for their personal and communication needs.

This school had all the students use a computer program called Successmaker as part of their computer time because it gave the teachers data that could be used for progress monitoring. So I had daily data for reading and math for this student. This student had a head mouse system involving a reflective dot on their nose that was picked up by a webcam on the computer monitor. The student hit a large button (think the “easy button” from Staples) to click the mouse.

Using this assistive technology, this student was consistently getting 60-75% of the grade level questions correct. Seeing this, I wondered why this student was in a full-time special education classroom placement. I felt that was holding this student back. So I made my own assumption and ran with it. I assumed they were a kid with a great brain but a body that was uncooperative.

I started by moving this student into a general education class for whole group reading and math. I figured since the student had a 1:1 paraeducator, they would be able to figure out how to survive the general education classroom. Well, apparently survival was not the question, it was participation. This student was able to complete assignments at grade level without any problems. She used an iPad to point to the numbers that were needed on the assignment and the paraeducator wrote them. With time, the student just got a better iPad program that let them just do the whole assignment themselves.

Reading showed similar success. When given choices or time to tap out answers using an adaptive keyboard, we saw grade level reading comprehension, meaning both the student was able to read the material and concurrently understand what they were reading. Now, even a significant number of non-disabled students struggle with this. Additionally, at this point the student also got the burr up their butt that they wanted to write. They wanted to type. They wanted to do the work themselves. So the paraprofessional let them. For writing, the paraprofessional grabbed a pencil in her fist and stuck a thumb up. This student grabbed the para’s thumb and used it like a joystick to write. The para even would talk to me and actively not pay any attention to what the student was doing to be sure not to influence any writing. The student also started using the adapted keyboard independently as well, even though it was extremely difficult.

The final hurdle took some more creativity. Communication. This student did not have the ability to speak. They did not have sufficient motor control to form the right sounds. However, this student was a social butterfly. They loved being in groups and always tried to be in the middle of things. We found out one day when there was a scheduling issue that put some physical therapy at the same time as recess. The student tried to communicate their displeasure using the iPad, but was ignored. They tried by yelling, but were ignored. So, to make their point, the student dumped their wheelchair started crawling outside without the para. Point made.

Our communication plan was simple: the student’s mother would program in a set of communication statements on the iPad connected to the button. In the morning, the paraeducator would have a typical beginning of day conversation with the student in the 10 minutes between arriving on the bus and class starting. Then the teacher started joining in. Then peers. After a while we programmed the iPad with some corny knock-knock jokes. It was constrained communication, but it was communication.

We also saw something interesting…the student started to vocalize more in the hallways and class to get our attention so they could communicate. We even set up a few pre-determined questions for this student to answer so they could prepare and get the communication button set up with the answer during the lesson so the student could hit the button and participate in class.

In the end, by making the least dangerous assumption regarding a student with multiple disabilities, we helped a student succeed. They worked their way out of a special education unit. In fact, they do not receive any kind of academic special education services at all. They just have a 1:1 para for hygiene and mobility assistance. On year-end testing they received a 3 out of 4 (which is “proficient”) for the English Language Arts testing and a 2 out of 4 (“approaching proficient”) for each the Math and Science testing. This student has friends that walk across the room talk to them and bask in a toothy grin. They hang out with a set peer group at recess. They communicate with teachers in class and in the hallway. They have it all.

All because we made the assumption that this student could do it. We never entertained the thought that they would fail. We challenged ourselves with the student’s success. And the student made it.

Conclusion

Kids can do amazing things if adults believe in them. They are also capable of spectacular failure if adults don’t. So, in a very real and tangible way, their success depends on our belief in their abilities.

To follow the least dangerous/harmful assumption there are things we can do:

Focus on who/what students are becoming, not what they are doing at the moment

It is the PROCESS, not the PRODUCT that matters

That Ah-Ha or Eureka moment may just be around the corner

Assume intentionality in communication

Always assume they are trying to communicate

If nothing else, you will teach them to intentionally communicate

See strengths

What can they do

Shape their strengths to compensate for any weaknesses

Always approach with the assumption of competence

Wait…Then Wait again

Rushing is not an effective way to identify skills and abilities, it often masks them

Patience is a virtue (give time for skills to develop)

Allow for a longer processing time (Getting the right answer eventually is still getting the right answer)

Like this:

A Personal Aside

I have been thinking about communication in autism quite a lot lately (see my Go Fund Me project). I think we often sell people with autism short with regards to their communication and we often do not give them the credit for wanting to communicate with the rest of us. The point I’ll be making is that they do want to communicate, often emphatically, but that their communication might be in a different form than we are used to and we need to work harder at trying to communicate with people with autism.

I also have been thinking about how important it is that we teach children with autism how to type as well as providing speech services and OT for handwriting skills. Being able to type opened life up for my brother like nothing else would have been able to.

To explain my thought process for all of this and how these two disparate thoughts connect, I will go through the story of my late autistic twin brother’s struggles and resounding successes with communication. Hopefully you will also get to know Kyle a little bit better by the end of this post.

So how does a nonverbal autistic child communicate?

I wonder about this question because Kyle and I were partners in crime. And my parents are not sure exactly whose idea most of the nonsense actually was! I threw Cheerios on the green and gold shag carpet in the living room and Kyle stomped them good! Somehow Kyle and I got him put into the wood burning fireplace in the living room and I was smearing him with soot when mom caught us. I also went out to the garden and picked some green watermelons, “accidentally” dropped them to open them, and Kyle and I sat outside at a table with spoons and munched away. How did we coordinate this? I think at some point my mom learned that both Kyle and me giggling probably meant we were up to no good.

That gets to my question: How was Kyle communicating with me? How did we come up with these super-fun plans? I still don’t have an answer.

I remember Kyle learning communication skills at CBTU (now the Carmen B. Pingree School for Children with Autism in Salt Lake City) using a felt board, sign language, and verbal speech presented simultaneously. I never truly saw Kyle connect with the felt board. He seemed more interested in words and books/magazines he saw around him. This was important and we should have recognized it earlier. Kyle gave us early signs he loved the written word. When he was being tested to enter CBTU, he was rewarded for good behavior with access to magazines. He would flip through and it was clearly rewarding. When he was told to give the book back, he flipped faster and faster. When it was taken away, he latched on the cheeks of the teacher with true anger. He wanted to see those words. At the time we did not understand how deep Kyle’s connection with words really was.

While Kyle was at CBTU, I distinctly remember picking up little snippets of sign language to help talk to Kyle. I would steal glances at my mother’s sign language books to see if I could learn it. Kyle never really seemed to connect with sign language though. I think it was because it was just plain easier for him to grab my hand and show me what he wanted rather than to try to make me understand through sign language. Kyle also never had patience for people trying to make him say things “right” to get what he wanted or felt he needed. He would just want to get straight to the point. All the way to the end, Kyle did use sign language when it was faster than typing. He asked for someone to help him get a drink or to use the bathroom using sign language. He would say a very lazy “yes” or “no” because it was easier than shaking his head (interesting trivia, when Kyle was mad at me you could hear the snap of his fingers when telling me NO from the next room). In hindsight, it had to be extremely frustrating for Kyle those early years having to try to communicate with us in his wordless world. We just were not understanding him the way he needed us to.

My family literally gave Kyle the gift of speech

When Kyle was 5 years old (this was 1986 for those keeping track) my family took it upon themselves to purchase Kyle what he desperately needed, a machine to let him “talk” to us. They bought him a Touch Talker. It weighed a ton and was super clunky, but it immediately changed his life. I vaguely remember that there was a function for pre-canned phrases (Minspeak) that could be selected based on the pictures on the keyboard. I also remember Kyle didn’t like that very much. He seemed to have either more or more interesting things to say than those programmed phrases would convey. One day when he was 5, the Touch Talker was left on spelling mode and Kyle typed “Iwanttogooutsideplease”. My mom took the initiative to teach him that there are spaces between words. He never turned it back to the Minspeak functions, ever. Never. He just wrote. The words just started to come out. He was only 5! He had only used the Minspeak function for slightly under 3 weeks. He loved words too much. So he started spelling and we (read: mom and dad) nurtured it. He loved typing so much he wore out the keyboard overlays multiple times. In the end, he didn’t need them. He knew where the letters were.

My parents bought Kyle that first Touch Talker while he was at CBTU. He then got a replacement that was not quite so heavy in 3rd grade. This was nice. In 7th grade, Kyle got a laptop, with the thought that he could both talk and do school work with it simultaneously. Kyle was not impressed. He was not able to simply turn it on and immediately start talking. He had to sit and wait, so my family invested in a LINK for Kyle. Now this was lightning fast and light as a feather. This one was Kyle’s favorite and the one he stuck with until he passed away. He got an “upgrade” of his LINK in senior year of high school, but again, it would not turn on fast enough. When Kyle wanted to talk, he wanted to talk, immediately. So he went back to LINK. Even though by this time the “e” was completely worn out and the delete button was dead. It was his voice and he clung to it until the end.

I honestly believe Kyle learning how to type literally changed his life. It allowed him to connect with words. It let him spell. It let him talk to us using his words. It was the pivotal moment in his life that changed it for the better. Even as a little kid I remember Kyle’s hands moving ever quicker along the keyboard as he expressed his thoughts. And even better, Kyle now had a voice. To this day when I think of Kyle I actually hear his humming (much to my chagrin), but his voice is from his LINK and Touch Talker. They were part of him.

Kyle’s communication

My wife said something interesting to me this morning. Upon reflection, she never really noticed that Kyle was nonverbal. This is not a stretch to believe because I have a very quiet father. If there is no reason to talk, then he doesn’t talk. Kyle was the same way. As my mom said this afternoon “[Kyle was] not a man of a lot of words until he wanted something, then he would explode with words and wants.” This is a great description of Kyle. He just went about doing his thing, but if he ever had anything to say, he would make sure you heard it. I remember getting bopped many times by Kyle when I was not paying attention or tried to wander away before he told me everything he had on his mind.

In hindsight, there were times that I forgot Kyle was using a computer to speak for him. I remembered when I realized I had to go into the living room to “hear” Kyle talk to me. If it was really important, he walked out and dragged us in to the living room so he could tell us what he wanted-and he made sure we listened. We always had his touch talker or LINK sitting in the living room. We grew up with a Touch Talker on the end table by the couch. After Kyle got the LINK as an upgrade, it lived on the piano in the living room, and later a table that replaced the piano. One of the coolest features of Kyle’s communication was that he almost talked faster than the rest of us. That is because he typed so fast. His LINK was able to keep talking at a normal speech cadence as he let his thoughts out, it was remarkable.

The most amazing thing about Kyle being able to type at normal speech cadence, was that he only typed using four (occasionally 6) fingers, his two index and two thumbs and when he needed speed he used his two middle fingers. He was completely self-taught and was able to type 130 words per minute (no errors). He also reflexively understood how to spell words. Even medical transcription was not beyond him. He just knew how to spell. He always had.

The more broad thoughts I’ve had lately is how researchers, school districts, teachers, and aides cling to fixed expectations for how people with autism should be “managed”, educated, and in general behave. I’ve always wondered how the CBTU evidence-based methods of using a felt board, sign language, and verbal speech presented simultaneously may have actually delayed speech and communication commonly seen in children growing up in a bilingual household. Kyle, from a very young age, was clearly telling us how to communicate with him, but it seemed like everyone around was focused with a fixed mindset of what’s expected, what’s normal, what has to be, until my parents thought outside the box and purchased Kyle a Touch Talker. This reminds me of the Star Trek, The Next Generation episode, “Loud as a Whisper” where the theme was learning how to turn a disadvantage (Riva who is unable to communicate) into an advantage (Riva is forced to teach sign language to two warring tribes and as a result everyone will hopefully learn to work together). Kyle was teaching us what he needed, we weren’t always willing to learn.

In my experience, individuals are often too quick to presume what is always in the best interest for children with autism. They’re quick to judgement. However, judging a child with special needs doesn’t define who the child is, it defines the person doling out judgement. It would have been all too easy to presume Kyle was stupid, because he didn’t speak. But anyone who made that perverse presumption was dead wrong, as many school teachers found out when they tried to accuse Kyle of cheating in school by letting the aides complete his work. Throughout his life, people tended to talk “at” Kyle and did not so much engage in communication “with” Kyle. As I’ve blogged before, I’ve been guilty of having wrong presumptions about Kyle. Because I’ve made these errors in the past, I’m more sensitive to not allowing my initial impressions or the rumor-mill gossip about a student cloud their true personality. Labels like, “this child can’t talk, he/she must be stupid” only gets in the way of genuine communication. Children with autism are often being very explicit about what they need, much like Kyle was. They are communicating; are we willing to grow and learn from them? Are we really listening?